Disability Studies Quarterly
Spring 2006, Volume 26, No. 2
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


Being bent over backward: A mother and teacher educator
challenges the positioning of her daughter with disabilities

Leigh M. O'Brien, D. Ed.
Department of Early Childhood, Elementary, and Literacy Education
Montclair State University
1 Normal Avenue
Montclair, NJ 07043
Phone: (973) 655-3471
E-mail: leigh.obrien@montclair.edu


Keywords: Disability, Special Education, Personal Narrative

Abstract

In this paper I draw on my life story as a teacher educator and the mother of a daughter with disabilities to trouble the identity that positions and labels her as, first and foremost in U.S. school settings, a "child with special needs." Drawing on a brief snippet from our profoundly interrelated lives (Hillyer, 1993), I argue that educators must reconsider the positioning of children who differ from the "norm," and stop labeling, and hence limiting, children. I end with recommendations for personal, educational, and societal policies and practices that would be less painful and limiting, and more inclusive, supportive, and ultimately democratic.

Introduction

My daughter Lydia, now 12, is a child with "special needs" — at least in U.S. school settings. The most recent categorization of her for the purposes of her Individualized Education Plan (IEP) is "cognitive impairment — mild." If forced, I describe her as having general developmental delays. Thus, in the popular lexicon, especially with regard to schooling, she is one of "those" children (as in, "I don't want to work with those children.") So others position her; so she is hailed (Althusser, 1971). I ask here, can she/we resist those positionings? Can she learn to refuse the interpellation (Ellsworth, 1997)? How might school structures and pedagogical approaches change so that she is not so uncomfortably positioned?

In this paper I want to trouble — in two senses — the identity that bends Lydia and me over backward, the identity that positions her so painfully. That is, I am troubled by the identity that is ascribed to her, and I also want to challenge or trouble the ascription of the identity. Those who are labeled are reduced, as signifiers become identities; there's always more — they're always more (Ayers, 1996). Although obviously personal and idiosyncratic, I hope her/our experiences will resonate with others attempting to deal with similar positions — both those who share similar identity positions as well as educators who are working with those in her position.

I situate my exploration in the view that distinctive ways of knowing arise out of and are tested against her lived, everyday experiences, and draw on my life story as a (single) mother and teacher educator/scholar to give "testimony" or "bear witness" (Burdell & Swadener, 1999) to her/our ongoing struggles with a society that exacts a steep toll on those who are "different." Based on my daughter's and my struggles with our "profoundly interrelated lives" (Hillyer, 1993, p. 105), I will raise some issues to ponder, and identify some implications of her/our situation. I end with recommendations for personal, educational, and societal policies and practices that would be less painful and limiting, and more inclusive, supportive, and ultimately democratic. Through auto-ethnography, I am, then, attempting to re-write the self and the social (Reed-Danahay, 1997). Greene (1998) writes about the power of the human experience to concretely and powerfully convey the depth and effects of social injustice; I hope her/our story in some small way does this.

I wish to note that I am only addressing one facet of Lydia's identity here. Identity is multiple, contradictory, and dynamic, and she, like everyone else, is a multi-faceted being with many complex overlapping identities (see, e.g., Davies, 1993; Scholl, 2001). Further, Lydia is not merely a passive recipient of an ascribed identity. She resists, but is also increasingly complicit in the active construction of her identity as a child with, as she says, "special learning needs." That she now so self-identifies speaks to the power of this discourse. However, self-identifying in this way doesn't mean Lydia has a positive view of her positioning. As I was preparing to present the first iteration of this paper, I worried I might be attributing inaccurate feelings to her so I asked her how she felt about being labeled as a child with special needs. She fired back with no hesitation, "I hate it!"

And, although for some it may be painful to read her/our story, I do not share our lives so others can "feel our pain." Instead, I offer this representation of our experiences (primarily from one year of Lydia's elementary schooling) so that others may imagine their own uses and applications (Winograd, 2001). My goal is to encourage compassion and promote dialogue; the telling of her/our story is a method for inviting the reader to put her or him self in her/our place. As Lorde (1980) wrote in The Cancer Journals, survival is only part of the task; the other part is teaching.

The story I tell is both of ours, but for now I am the one telling it. In the near future, as Lydia's awareness and ability to tell her life grows, I want her voice to be heard more clearly. Rather than me speaking and writing about her, I hope we will speak and write together. What we can learn about difference by attending to both the child with disabilities and her mother should move us away from the notion that the child is necessarily an "other" to the mother...or vice versa. We need to hear both voices; they need to hear each other; and each must be believed if "difference" is to make a difference (Hillyer, 1993).

***

A week in our lives

To provide an idea of what our lived lives are like, I will first relate a typical, though constructed, week during the winter of one elementary school year in order to make our intersecting challenges a bit more concrete. I also want to point out that despite the many challenges we face, our lives are no doubt much easier than those without our many privileges of skin color, social class, and language: we are European American, middle class, and English is our first language. In addition, as a former preschool teacher and current professor of education, I have both educational and experiential familiarity with schooling, and hence social capital on which I can and do draw.

Monday mornings are almost always challenging as Lydia does not enjoy school — not surprisingly since it's such a struggle for her — and so often resists going. Further, she is what some call a difficult or high-maintenance child ("spirited," Kurcinka, 1998, to use a more positive term), and persistence/stubbornness is one of her character traits. Thus, we often argue vociferously about whether she is sick or schools will be closed due to snow or about something else that allows Lydia to question the inevitable. Frankly, I understand why she does not enjoy school, and so I have a hard time pushing her to go.

Once I get her on the bus, I do a little exercise and then go to the office where I will stay until 5:30. Some days I get a call that Lydia is not feeling well and is in the nurse's office; most often these are "false alarms" that have much to do with her unhappiness at school but they are unsettling nonetheless. During the afternoon I go to my counselor on campus for some emotional support as I am feeling overwhelmed trying to single handedly arrange for our pending six-month stay in Sweden where I will study Swedish schooling for young children with special needs. Counseling has become a necessity for me at times to help me cope with my multiple responsibilities.

Most evenings we unwind a little before doing homework and attending to other chores. Sometimes we take a walk or go to the library, and frequently Lydia asks if she can call a friend to come over. Wanting her to have at least a few friends, I sometimes feel I must be "super mom." She wants friends to come over to play, to stay for dinner or overnight, to go the amusement park with us. We have kids' parties for every conceivable occasion, and take her friends with us to the library, coffee shop, and local events, but still together suffer the rejection of numerous "no, sorry, not today" responses or unreturned messages.

Tuesdays are a long day for me/us as I almost always teach a class until seven p.m. This means that each semester I have to have a sitter who has a car and can pick Lydia up at child care, take her home, feed her dinner, and so forth. This semester we have been fortunate that last semester's sitter is available Tuesday evenings; many semesters I have to find a new sitter who can do all this — and who enjoys being with/can handle Lydia.

Wednesday this week begins with one of my least-favorite activities, a before-school "team meeting" at Lydia's school. At these monthly meetings, the teachers and support staff who work with Lydia share their observations on her academics and behavior. The news is not often good, so I find myself a bit defensive and worried prior to these meetings. As I have written elsewhere (e.g., O'Brien, 1999; 2001), the school and I often disagree about what is "best" for Lydia, and it is impossible for me to take off my early childhood teacher educator hat when addressing her education. Lydia must come with me, and this year she has even participated toward the end of each meeting which is interesting and necessary as she ages, but also stressful because of her difficulties in understanding the nature of her disability, and, I believe, the power she rightly perceives the school people having. It's painful for me to watch her struggle to be brave and "grown up" as the school professionals talk about her "needs" and their plans for her education.

Wednesdays are rather long days for us, as I teach a late-night class. This year Lydia has been coming home on the bus Wednesdays and we are together for a couple of hours until I go back to teach until 10 p.m. This semester we went through three sitters (and two nights of Lydia with me in class) until I found someone who could watch her. In addition to the stress of finding competent care, I feel guilty these nights because someone else puts Lydia to bed, and she often compounds my guilt by leaving a sweet message on my office answering machine about how much she loves and really, really, really misses me.

Lydia has Girl Scouts on many Thursdays; today I have to pick her up early from Scouts to take her to the doctor's office to get a prescription for her enuresis. Unfortunately, we get to the office a little late, and the doctor will not see us. We reschedule for the following week, meaning more time off work for me and a longer wait to address this problem. Lydia sees several doctors for problems related to her delays. For example, she wears a back brace for scoliosis and we go regularly to both her orthopedist specialist and the prosthetics office to check her progress and the effectiveness of the brace. Sometimes I have to take her out of school, and almost always I have to leave work.

Friday morning I attend a workshop on "dealing with oppositional children." I choose to attend in part for professional insight, but, I must admit, more for help dealing with Lydia who has been more oppositional of late. While I find the workshop very interesting, all of the good doctor's examples are about children with average to above average intelligence. When I tell him about our situation, he admits he doesn't really know what to do with a child who is both developmentally delayed and oppositional. Although I find some of the information helpful, I leave feeling more than a bit depressed. Situations like this are reminders that no matter how much I might want it to be so, Lydia will never be able to do what children who are typically developing can do. Grieving is an ongoing experience when you have a child who has disabilities.

I spend Saturdays and Sundays trying to get caught up on all the other things I need and want to do that I rarely have time to do during the week. I also spend the weekend feeling guilty that I can't spend more time with Lydia because I am doing all these things. Lydia spends the weekend waiting for me to do these things or reluctantly helping me. Mostly her weekend is spent trying to find friends to come over and play or do something outside the home with us. If Lydia has a long weekend off from school, I will take her to meet her dad at a mid-way point and then drive back home for some much-needed rest and relaxation. Although I am happy to have a little time to myself every now and again, I also miss her and worry about her and cannot wait for her to come back so that we are together, our lives whole again.

"Othering"

In many ways Lydia is like others in that she lives a complex life with numerous dimensions. But, because of her ascribed position as a child with disabilities/special needs she is also different from others. And because she is different, she is often seen as an "Other," labeled in ways that negate her full personhood and the complexities of her identity. Rather than being herself, subject of her own life, she is defined as the colonized other/object. Being defined in school settings as an Other limits Lydia's ability to construct her own identity. This positioning also causes feelings of shame and pain for Lydia, and pain, loss, and grief for me as her mother, as some of the incidents above suggest.

Gartner and Lipsky argue that "responses to disabilities are not 'natural'; rather they are invented, different at one time or another, from one culture to another, from the perspective of one discipline or another" (1999, p. 102). In today's U.S. schools, the typical response is to put children who are seen as different in general education classes, and then ignore them — or to categorize and then segregate them in resource rooms, self-contained classes, or special schools. In fact, some have suggested that the creation of the institutional framework of special education has served "...to provide an education for 'normal' students unimpeded by students who are troublesome, in the widest possible sense" (Tomlinson, 1995, p. 127; see also, Biklen, 1992; Davis, 1995; Rhodes, 1995; Riddell, 1996).

Lydia and I have felt the pain of those labels, of that kind of separation. While her rights to education have been upheld, perhaps, Lydia has been put into categories based on the current definition of her disability, and then separated out (i.e., grouped with other children with perceived special needs) as often as the school/district/Committee on Special Education (CSE) has been able to get away with it. However, being a believer in inclusion and having a fair amount of social capital in this arena because of my education and job, I have every year insisted that Lydia be placed in a class with her typically developing peers. Despite my efforts, because most of the other children with special needs have been removed ("so their needs can be better met," I have been told more than once) and because, in my opinion, her school doesn't really believe in inclusion, as in the question asked by a parent representative to the CSE, "Wouldn't she be happier in a class where all the children are different?", Lydia still stands out because in her class only she has to go to Resource Room for "special help." Only she needs an aide to help her "do her work/stay on task." Only she is identified as "different." She just does not fit in, at least not in our upper-middle-class neighborhood and school where most of the children do very well academically. Her discomfort is, then, not caused by her disability so much as it is caused by active marginalization, isolation, and the lack of existing supports.

***

What would it take for U.S. society and schools to stop labeling, to stop positioning Lydia in ways that attend primarily to her differences, her perceived deficits, and that negate her full personhood? I offer a few suggestions for a more caring, democratic society and more caring, democratic schools. As a first step, we might increase our sensitivity to the particular details of the struggles of other, unfamiliar people; such increased sensitivity makes it difficult to marginalize people different from ourselves. This is part of the process of coming to see other humans beings as 'one of us' rather than as 'them.' There are significant consequences when we disqualify another's knowledge or experiences; one of these is certainly the emotional suffering those who are marginalized feel. This is the main reason I/we tell our story.

Next, I want to propose that we trouble the very notion of labeling. As I, and many others see it, the main problem with labels is that they conceal more than they reveal, and they change the way we see people. Further, labels, especially those used in special education, tend to emphasize "deficiencies" and focus perception and action on remediation of the perceived deficits. Hence, perhaps, the descriptor I've heard several times recently at an early care and education setting: "the IEP kids." When I questioned the label arguing that children aren't defined by their IEPs, I was told by two teachers, "Yes, they are." Ayers (1996) said it well: "So much of modern life and schooling aggregates, labels, groups — and ends up treating people like things." Only if we stop using labels to force people into painful and necessarily limited positions can we build a less hierarchical and more democratic society where each person is appreciated for what she or he can contribute.

The terms we use also need to be interrogated. For example, Swedish educators refer to a child with disabilities as being "in need of special support" putting the emphasis on environmental needs, whereas in the U.S. most educators use the descriptor, "a child with special needs" which locates the "problem" in the individual child. Welsh educators have begun talking of some children having "additional" rather than special needs, and in New Zealand, the term "differently-abled" has had currency for some time. Perhaps even more radically, the schools for young children in Reggio Emilia, Italy, refer to children with disabilities as "children with special rights." Obviously, the words we use reflect our thinking about this issue and can lead to widely varying practices. I'd like Lydia to be seen as a child with special rights who sometimes needs special support.

I believe U.S. educators need to discuss in great depth the "dilemma of difference" (Minow, 1990). In this all-too-common scenario, if Lydia is different from others, she is the problem and the solution must focus on her. Instead, rather than the identified trait signifying and hence isolating her, I am arguing we must see the problem as being in large part socially constructed. In this scenario, societal institutions such as schools would be required to reframe their understanding of difference and to restructure their responses to it so that all are responsible, and all are involved in finding a solution.

I see all this as a social justice issue. And, with Dewey (e.g., 1909/1975), Milani (1966), Mumford (1946), and others, I believe that it is the teacher's social responsibility to take a stand against injustice — that is, if the purpose of the school is to educate responsible and democratic citizens as most Western societies aver. Dewey singled out the area of shared concerns and the liberation of greater diversity of personal capacity as the very hallmarks of democracy (1966). His vision of democracy welcomes plurality and diversity and rejects barriers that exclude and divide (Cuffaro, 1995). Almost by definition, the life experiences of a diverse group are more varied and thus offer greater opportunities for making unexpected connections.

When schools and teachers acknowledge, even highlight the diversity of experiences and perspectives all students bring to school, children and youth are able to see themselves in the context of social views different from theirs, and thus they are able to reconstruct themselves in the face of a troubled society. Absent diverse views, unable to change themselves, they are likewise unable to change their worlds, and thereby become slaves to their history and habits (Glassman, 2001). Skrtic (1995) adds, "homogeneous grouping practices work against promoting social responsibility in students and developing their capacity for negotiation within a community of interests, outcomes that require public schools to be a setting in which unity and cooperation are the norm"(p. 258).

If we are truly committed to educating responsible, caring, democratic citizens, then our schools must have a humanistic focus rather than an emphasis on efficiency; therefore, a broad societal analysis and critique is needed, as is attention to each unique person. In this way we can avoid both an individual and a social reductionist model and instead use what has been called an anthropological model (OECD, 1994). In this model, the capacity to care, to take responsibility for others, is seen as a core human trait. Children, then, become a central and precious concern for the whole community, and the most important concept for the future of humanity (Allodi, 2002).

As educators, this is our ethical responsibility, our moral imperative: We must strive to see every child as a unique human being with hopes, dreams, aspirations, skills, and capacities. We must assume a capacity for full human feeling, for deep reflection and thought; we must see each child as being "of promise" (Ayers, 1996; Swadener, 1990). No doubt because I/we live with disability, I have come to believe in a perspective on disability that leads to an emancipatory agenda and autonomy as opposed to helplessness (Gustavsson, 1999). The bottom line: Equality means all people are equally important and equally valued.

As opposed to an "equality-as-uniformity" position, a top-down orientation, "equality-as-equal-opportunity," a bottom-up perspective, means individuals and groups maintain their right to be considered of equal worth, even if they are different. Further, the principle of self-determination, of human agency is important here as well if people are to be the subjects of their lives rather than objects. If the perspectives of children with disabilities were important, for instance, schools would be compelled to introduce and support values that are often invisible or carry little weight. Lydia may struggle academically, but she brings color, creativity, and compassion with her to school — and these should be valued, too! The presence of children (and parents) with a different view of life can be seen not as a threat but as a resource for realizing, in very real terms, the values of justice, rights, and solidarity. These values can compensate for other values focused on individual enhancement, for example, achievement and competition, which, despite the rhetoric of care, are the highest values in many, perhaps most U.S. schools.

Concluding thoughts...for now

My daughter and I are tired of being bent over backward by her ascribed labels. As do others in her position, she wants to be known by her name, not her label, and appreciated for her personality, interests, and abilities — that is, who she is. Her disability is only one of many characteristics of her whole persona. She is not her diagnosis or "category." Her potential cannot be defined by her disability label. I want her to have teachers who reflect on and actualize a posture that brings full acceptance to the humanity of her person.

I hope others will join those of us trying to get out of painful positions as we work to construct a new society where each child, each person is seen as being rich in potential; as having power, dignity, and many, varied strengths. Work with us as we fight to move away from a conceptualization of difference as deviance or deficit. Join us as we challenge, and, I hope, dismantle, cultural borders (Aronowitz & Giroux, 1991, p. 119) including attitudes toward disability as well as institutional structures that separate and exclude people with disabilities from their peers. Help us resist those who would hail others exclusively or primarily by their socially constructed categories; help children with disabilities reclaim their own identities and their own places in the social formation of schooling (Kliewer & Fitzgerald, 2001; Peters, 1996). Be our allies as we attempt to re-write the scripts that confine and try to refuse the interpellations that highlight differences while downplaying our commonalities.

Educators have three options when trying to move an authoritarian, bureaucratic organization or system (such as the U.S. school system) in the direction of democratic community: We can leave; we can conform; or we can express ourselves, argue and protest, and try to change the situation. I am arguing for the last. Becoming visible and using one's voice can be dangerous — even in purportedly free societies like the U.S. — but these strategies can also be successful in the long-run, contributing to local and systemic change. The creative function of difference, according to Lorde, renders interdependence unthreatening and gives us the power to effect change (1984). Let us use the power we have.

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Copyright (c) 2006 Leigh M. O'Brien



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